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The whole idea of having an Habilitation Aide for my son is becoming more and more bizarre as time goes on.

We’d been so thrilled with the friend who’d taken the position of his aide. For two years, things were great. There was an occasional request for time off because of an activity with her kids or one of them being sick, snow days, etc., but nothing major.

Last year she broke the news to us that she’d been diagnosed with cancer. She continued to work through the chemo-therapy, as we’d adjusted her schedule to accommodate the treatments. When she knew the first of two surgeries was approaching, she went on a medical leave of absence. We guaranteed her that her job would be here for her when she came back, not to worry. (She recommended a friend of hers as a back-up aide to take her place while she was off work.)

During her medical leave we hardly heard from her. When I did try to find out how she was doing, she was evasive. I chalked that up to the medications she was taking.

9 months later, the time for her return arrived. She told us she was cancer free. She wasn’t able to start back on her first day of work, she then asked for the following week off. There have been a series of additional days she’s taken off for various appointments for her kids or because she said she was sick. Every month since starting back in June she’s taken time off. On average she’s missed roughly one quarter of the hours she’s been scheduled to work each month.

Last week she took two days off (it’s important to note she only works a maximum of five hours a day three days a week.) and this week she informed me she needs another 8-12 week medical leave starting in January. I immediately thought her cancer had returned. She told me no, it wasn’t that, but that she’s opted for elective reconstructive surgery. She shared that she was told she’s not a particularly good donor for the procedure, but she’s going to do it anyway.

I told her I would have to talk to the agency she’s technically working for to see how they’d want to handle that, as they’ve reminded me a number of times that, paraphrasing, this job is no different from any other, an employee can’t just come and tell you they are taking time off, or call off repeatedly and expect to be accommodated and not put their job in jeopardy. They’ve also reminded me that I shouldn’t be changing my son’s schedule to accommodate his aides, because they have a set schedule, they know what it is, it’s what works for my son and they should be scheduling around their work hours, not asking to have their hours arranged to suit other appointments they’re making. I’ve explained to her that in the past the agency intervened and terminated one of our aides because of excessive absenteeism.

She became very defensive, saying it’s part of her cancer treatment and as such they can’t fire her for taking medical leave. She then informed me that she’d fight them on it.

I was gobsmacked by her attitude and aggressiveness. As if I was doing something to her, inconveniencing her, being unreasonable. I told her I still wanted to know what the agency’s policy was before I said anything more. I reassured my son that we’d talk to our back up aide, even though it was a long way off, and let her know we’d be needing her. I told him not to stress about it. She interjected that he’d be fine. I said no, he might seem fine when he’s with you, but when he’s home with us, he stresses over things like this, talks about this sort of disruption to his routine incessantly.

When they had left for the bus stop, I fell to pieces, sitting at the kitchen table.

The folks we’ve employed as aides for my son’s program have, not one of them, even seemed to consider how their disruptions to his routine impact our family. He’s so fed up with all the schedule and routine changes that he doesn’t even want to participate in the program we’ve created for him anymore.

We’ve been dealing with changes to my husband’s schedule with mandatory overtime being different every week (sometimes Fridays, sometimes Fridays and Saturdays, sometimes working only regular hours with no consistency), which is disruptive for our son and for me.

I’ve been dealing with my own health issues, the loss of my powerchair, side effects and complications from medications, increased pain. I’m having a lot of trouble with my memory, keeping things straight. There have been changes to reporting procedures with the agency that have caused a lot of stress.

I contacted the agency and asked if our aide was right, if reconstructive surgery was considered cancer treatment per our state’s labor laws. I asked if she’d be required, after missing so much time, to submit doctor’s excuses with each additional absence. I asked them how they wanted to handle another extended medical leave. They informed me that they had to consult Human Resources with these questions.

They told me they will likely not even approach their decision as to how to handle the situation based on the medical leave per se, but on what is best for my son, how this will effect him. We discussed that he’s been complaining since she came back to work that she’s not the same, that some days she’s not ‘present.’ He’s even told her he would like her to be more present. He’s noticed that she’s not communicating with me hardly at all, not at all like she used to. She’s not communicating about what they’re doing when out, if there’s been progress, any issues, etc. I ask her each day, but I get little to no response, everything is always fine. I can’t put fine down on reporting forms. She brings him home, says she’ll see us on her next scheduled day and out the door she goes.

Things are most certainly different now. The dynamic between my son and his aide is different, the dynamic between his aide and I is different, there’s a distance there that’s uncomfortable and awkward.

I haven’t been able to communicate to her how these months since her return have affected us, how all these chronic absences have made us feel. My son feels as if he doesn’t matter and has said so. I feel taken advantage of, that telling her not to worry, her job would be waiting for her, gave her the wrong idea about taking time off in general. I’ve become resentful, just waiting for the next shoe to drop. That’s incredibly stressful. It’s also made me distrust her, to some degree, because she’s become so unreliable and inconsistent. My trust has also been tested by the fact that I’ve caught her posting on Facebook while she’s on the clock with my son, twice, since returning. That’s an absolute violation of policy.

I don’t know how this is going to work out, where this is going, but I fear it’s going to become more of a mess than it is now, before it’s over. I’m trying very hard to reassure my son, I tell him daily that we have to take things one day at a time, that we are giving her the benefit of the doubt because of how cancer treatment affects patients, that we hope she, as my son says, “gets back on track” soon. I try to remain hopeful with him, optimistic, but here, on my blog… I can share my worries, concerns and feelings that i wouldn’t voice to him.

Trying to remain optimistic.